UICOMP professor pioneered treatment of fibromyalgia

PEORIA — In the late 1970s Dr. Muhammad Yunus began studying a set of symptoms most doctors dismissed.

The majority of those affected were women who complained of fatigue and widespread pain in the muscles and joints. Tests could find nothing amiss.

"Doctors back then said, 'They cannot handle life, they are full of stress,' " recalled Yunus, professor of medicine at the University of Illinois College of Medicine in Peoria. Patients often went home with little more than a pat on the back. Yunus felt compelled to take a deeper look even though his mentor discouraged him from researching the condition, then called fibrosistis.

Recognized today as the father of fibromyalgia, Yunus has devoted his career to studying the condition.

"I was the first one to put it all together," he said.

Today, fibromyalgia can be treated. The FDA has approved several drugs for it — the first, Lyrica, was approved in 2007, an event Yunus saw as a milestone.

"Who would have ever thought, in fibromyalgia, that there would be an FDA-approved drug for its treatment?" said Yunus. "When I started it was just not going to happen — how can the FDA approve a drug for a disease that is nonexistent?"

The road to treatment

Fibromyalgia usually comes on in stages, but in some patients the presentation is abrupt.

"I woke up really early, about 3 a.m. I went to get up and I hurt," said Charity Chaney of the night in 2009 when the first symptoms struck. "It hurt to stand up, it hurt to roll over. I just felt weighted down and tired on top of it. I thought, 'What the heck is going on?' "

The symptoms persisted into the next day when Chaney decided to seek medical help.

"My regular doctor couldn't get me in, so I went to the emergency room," she said.

At first Chaney, who was 35 at the time, thought she had the flu or had slept wrong. She was given muscle relaxers and pain medicine in the emergency room. They didn't help. After a few days the pain eased on its own, only to strike again a couple weeks later. Chaney was frightened.

"I didn't know what was going on," she said. "I hadn't done anything — I hadn't tripped, I hadn't fallen. I had a job where I don't do a lot of physical work. It was a little nerve racking."

This time she was able to see her doctor. He sent her to a chiropractor. It didn't help. Finally, after about six months, her doctor performed a tender points test.

"He started poking on me here and there, asking me if it hurt," Chaney said. "In over half of the areas, it hurt. It was really tender when he would poke that area. He diagnosed me with fibromyalgia and referred me to Dr. Yunus."

Chaney got relief within the first couple weeks of treatment — the first drug Yunus prescribed was Cymbalta. It worked but Chaney didn't like the side effects, so they tried another medicine.

"Within 30 to 60 days I was good — it worked," she said. But even though she was getting relief from the pain, she was still having symptoms which caused her to sometimes miss work. She was also having trouble with her memory, a common symptom of fibromyalgia. The two issues weren't playing well with her employer.

"About six months after I started seeing Dr. Yunus, I lost my job," said Chaney. She was devastated, but decided it was for the best — the stress of the situation had exacerbated her symptoms.

Stress is very bad for people with fibromyalgia. In fact, six months of unemployment proved to be good for Chaney. She got better and got another job. Her new employer is sympathetic of her illness and the occasional bad days.

"I have a boss right now who is really great," she said. "I do forget things from time to time and she's really great about it. My memory is still shaky, but I don't have the days when I just don't want to get out of bed anymore. You learn to live with it."

Hugs too painful

Fibromyalgia is incurable, but in most cases is manageable. Through a combination of drugs and stress-reducing techniques, symptoms can be reduced.

"Fibromyalgia is 40- to 50-percent genetic, and 50- to 60-percent environmental," said Yunus. In people genetically predisposed to the condition, stress, either emotional or physical, can bring on symptoms.

"Something pain stimulates the central nervous system, and it goes to the spinal cord," said Yunus. "It sensitizes the central nervous system so that it becomes extremely excitable, and this causes wide-pread pain." People who have fibromyalgia process pain differently than those who don't have the disease.

"This is a disorder of pain processing," said Yunus. "They are extremely sensitive to any stimulus of pain. I had a patient who said, 'I cannot hug my beloved grandchild because it is too painful.' "

Researchers have discovered that a nerve chemical signal called substance P is found in elevated amounts in the spinal fluid of fibromyalgia patients. The chemical's job is to transmit pain signals. In addition, patients tend to have lower levels of serotonin and norepinephrine, both natural inhibitors of pain.

"This is a disease of chemical imbalance," said Yunus. "It's a neurochemical disease."

Drugs that treat fibromyalgia basically work in two ways — they either decrease the effect of substance P, or increase the effects of serotonin and/or norepinephrine. While some of these drugs are also used for depression, Yunus is quick to point out fibromyalgia is not caused by depression. Some sufferers are depressed, but many are not.

"Fibromyalgia is not a depressive disease," he said. Treating a patient for depression will not alleviate fibromyalgia.

While drugs are helpful, they work best when used alongside lifestyle changes. Patients must work to reduce stress, get more exercise, and improve sleep for optimal results, Yunus said.

Sufferers finding a sympathetic doctor is an important first step.

"Just telling a patient what it is — that it's a real thing — that is very, very powerful," said Yunus.

Carrying the torch

Yunus published his first paper on fibromyalgia in 1981 in "Seminars in Arthritis and Rheumatism." It detailed his findings in the first data-based scientific study done on the condition. He began collecting data when he was a fellow at the University of Massachusetts, and wrote the paper, with the help of colleagues, after he began working at the University of Illinois College of Medicine in Peoria.

After publication the paper began generating interest.

"I was surprised by how much attention it got," said Yunus. "I was invited to give a talk in Sweden that very year. Rheumatologists were saying, 'Oh my gosh, we see this a lot and you have the data,' " said Yunus.

Yunus' goal was to educate physicians about the disorder so they could make a diagnosis. Subsequent studies detailed treatments.

Over the years Yunus has published 123 scientific articles on fibromyalgia and related topics, and he's given more than 150 educational talks worldwide.

Yunus saw his last patient in 2010. He's still teaching and doing research on a part-time basis. He's proud to have devoted his career to studying a disease most doctors dismissed.

"These women were suffering so much, and everybody thought it was all in their heads," said Yunus. "For fibromyalgia to be accepted by the medical community — so much so that now we have three FDA approved drugs — that was once unthinkable."

Yunus' research laid the groundwork for the next generation of researchers, many of whom are already working on better understanding of abnormalities in the brain and spinal cord.

"The research has to revolve around the central nervous system, and tease out all the complex components in the nervous system, which we know very little about right now," said Yunus.

The proliferation of fibromyalgia studies gives Yunus great satisfaction. He knows that greater understanding will lead to improved treatment.

"Now I can retire with peace — a younger generation can carry the torch."

Leslie Renken can be reached at 686-3250 or lrenken@pjstar.com. Follow her on Twitter, @LeslieRenken, and subscribe to her on Facebook.com/leslie.

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